There are lots of people on social media doing their bit for diabetes awareness, and this is fantastic. However, raising awareness seems to be a big buzzword these days, but what does that really mean, and how do we raise awareness of something effectively? Should I do it by sharing a random image on my Facebook feed that doesn’t tell any of my friends anything at all? Or should I use my social media to share information?
In this post, I will provide a short summary of the information revealed from parliamentary question responses on how many people in Ireland use insulin pumps, what clinics provide them as a treatment option and how many new pump starts are done each year.
My diabetes diagnosis shattered my confidence in my ability to take care of myself, and my plan quickly became to just get through the rest of the term, move home for the summer to my previous summer job and figure the rest out over the summer. Adjusting to my new normal of living with diabetes began while I was still in hospital, or did it?
I realised last year that in all the blog posts I’d done these last 13 years, I have never shared my diagnosis story, so here it goes. My diabetes diagnosis is not unique; many of my friends with diabetes share similar experiences; however, some people end up very ill and may have spent time in intensive care units in hospitals. Thankfully this was not the case for me, but I did feel like I was dying.
The purpose of the document is to provide an estimate of the number of people who are using HSE-funded Flash and CGMs in Ireland and to prompt a discussion around access equality. I believe we need to talk about how fair it is that so many are approved for HSE funding and why some people are still being made to pay.
Over six months ago, the Irish health service, the HSE, launched the reimbursement of the flash glucose monitor, the Freestyle Libre, to people with type 1 diabetes aged between 5 and 21 years.
It has been almost 9 months since the HSE announced that the reimbursement scheme would only be open to people with type 1 diabetes aged between 5 and 21 years which led to over 19,000 people signing an online petition to remove this age restriction.
When taking insulin in the morning MAKE SURE BRAIN IS AWAKE AND ENGAGED. Aaarrrg!
I gasped as I completed my insulin dose! Crap! I just realized I used my non exercise day insulin to carb ratio for my breakfast. I wasn’t even distracted by questions from young people, I just wasn’t fully awake.
Thankfully, I noticed it right away and instead of the paramedics giving me a lift home after my walk by way of the hospital, I decided to reduce my background insulin for 2 hours to counteract having more insulin than I needed. Then I adopted the wait and see approach. What other approach is there when you live with diabetes?!?
I did avert a nasty hypo, in fact, my glucose levels were a tad on the high side. So, I corrected and moved on.
From this point forward, I will most definitely MAKE SURE MY BRAIN IS AWAKE AND ENGAGED when taking insulin in the morning.
#LifewithDiabetes
After this hypo happened last February I wrote it down how I was feeling as a way to cope with the aftermath. It really shook me up and felt like a hellish experience. It really shook me up and felt like a hellish experience. I found it today when I was looking for some inspiration for this weeks blog post and the feelings I felt then are still with me six months later. So here is the Hypo Hell and other afterlife terrors.
3 February 2018
I could feel the full force of this hypo by the time I was in the kitchen making my breakfast. This one actually snook up on me: I haven’t had a hypo this bad in a number of weeks maybe even months because I wear a continuous glucose monitor (CGM) and it usually gives me a “heads up” so I can ward it off. But this time there was no warning.
The dilemma for me when a hypo presents just before a meal is if I can wait until I’m going to eat anyway instead of having to gobble a couple of glucose tabs (i.e. extra calories) I don’t need. But this one was not going to allow that so I reached for two glucose tablets (6 grams of fast acting carb) to at least take the edge off.
About 5 minutes later, I was trying to eat my toast slowly so as not to slow down the fast acting glucose. I did feel that I wasn’t dropping any lower but I did need the sweat to stop dripping from my forehead and my brain to defog. So I sat trying not to use said brain for 15 minutes.
What happened in the next couple of hours was really what left me feeling wretched - the rebound high. I had taken my usual breakfast insulin dose because I figured that the glucose tablets were enough to correct the low. What I didn’t factor in was the steroids I had on board that have made me very insulin resistant and needing to up my mealtime insulin by quite a lot to keep me in range.
As I started to feel nauseous while grocery shopping I found a place to do a finger check and I was 22 mmols (396 mg):-O I took some more insulin and this time I was more “generous”.
After an hour I could see my cgm arrow point ➡️ and I was reassured. The next hour the arrow pointed down and I was thankfully coming back into range to have lunch. But the rest of the day was very much about being a bit of a couch potato with a sore head.
I really don’t understand how people can think that managing diabetes with insulin is easy! If it’s so easy you can have mine. Seriously!
A couple of weeks ago I noticed that my driving licence was due for renewal this month. Thankfully, the very next day, my renewal form arrived in the post, so that was nice, something I didn’t have to do.
However, I’m a little embarrassed to find out that what I’ve been telling other people with diabetes for the last couple of years about being able to get a ten year licence has been wrong. The way the guide is written for healthcare professionals means they can’t- they can only choose the one-year or three-year option for renewing.
Taken from the Medical Fitness to Drive Guidelines
“If meets medical standard a 1 or 3 year licence may be issued.”
Well, Fine! (Said with attitude) I’ll grumble a little about having to do this every three years it is, after all in the best interest of public safety including my own. I’m used to doing the extra to be safe.
The 10 year driving licence renewal costs €55, the 3-year licence costs €35. I pay over €11.60 per year and my fellow drivers without medical conditions pay €5.50 per year. And that’s before I calculated how much more I have to pay in GP fees to have my fitness to drive form signed.
€11.60 versus €5.50
Another way to look at these figures is that over the next ten years I will pay one and a half times more: paying the NDLS €116 and my GP €150 making my ten years of licences cost €266 versus €55 + €50 = €105.
€266 versus €105
I complying completely with all that is necessary for me to be a responsible driver. I use my meter to check my glucose before and during a long drive. I make sure there is glucose in the car. I wear a continuous glucose sensor that alarms if my glucose levels are dropping and I pull over if they are.
In the UK, if you have a medical condition short term licence it is free to renew.
This is unfair! Why am I, and others, being financially penalized by the Irish National Driving Licence Service because I have diabetes?
Some of us know that diabetes care in Ireland is not where is should be. One way to help improve our service is to speak up: be an advocate. Speaking up isn’t for everyone but we do need to hear more voices in this area to be heard more. Anyone can be an advocate. But how? Where do you start?
I am not an expert in diabetes advocacy but I have learned a couple of things over the years that help guide me and may help you if this is an area you would like to get involved in. I also read a lot of blogs from fellow diabetes advocates around the world and continue to pick up new tips from those.
However, one of the many events where I’ve learned the most was a conference organised by Diabetes Ireland in 2010. It was chaired by the then head of Advocacy and Communications, David McMahon. At this conference, I learned a little about how this first diabetes advocacy campaign was going to work and about collaborating with others. I don’t have any notes of videos from that conference but it is all ingrained in my brain because I’ve used it so many times in the last eight years.
Another event I attended was the Diabetes Hands Foundation MasterLabs Conference in 2015, which focused on helping people with diabetes speak up and influence local decision makers about health care policies. What I learned at this equally useful conference I can share with you because the presentations are still available on youtube and still relevant. Each presentation varies in length and well worth your time.
Since then, the Diabetes Hands Foundation has since been dissolved but the diabetes community group attached to it is now part of Beyond Type 1.
Stacey Simms is the producer and host of a weekly podcast called Diabetes Connections. For more than a decade, Stacey hosted a top-rated morning radio news show in Charlotte, North Carolina and has worked as a TV anchor and reporter with won her several Associated Press awards in her time as a TV medical reporter.
Her son was diagnosed with type 1 diabetes in December of 2006, before his second birthday and shortly after she began advocating for type 1 diabetes.
In this video, Stacey give you tips about how to tell your story and how to get the attention of the media and some tips on what to do if you actually do get that interview.
I have shared all of my notes from Stacey’s presentation that day with anyone who needed them. Yeah, that useful!!!
Amy has since moved on from Lilly but still remains a leader in the Social Media Communications world. She talks about all the different social media platforms and advises on how to best use them to communicate with your audience. She focuses on the 4 E’s of Engagement - Educate, Empower, Engage, Evolve.
Her tips include:
People remember stories- so tell yours.
We have only 7 seconds to get the attention of someone, to tell them what we want them to do and why. Use it wisely!
It’s not just about being online. People need to take action offline too.
Does it matter and who care what I have to say? Yes! Politicians care. 30% of policy makers change their position because of what they read online.
At the time, Emily Coles was Head of Communities with Diabetes Hands Foundation and hosted a series of videos in her role. Emily talks about how she planned to tackle an opportunity to speak to a large unknown audience to advocate for the needs of people with diabetes.
Some of Emily's Tips:
Find a your hook/story (Emily used the WW2 aircraft)
Tell your audience what your mission is and ask them how they are going to support your mission.
This! This is by far the best explanation of how to tell your story, how to connect with your audience, what tools to use. This video is only 15 minutes and if you only have time to watch one today, make it this one!!!
I still continue to learn from blog posts of fellow diabetes advocates around the world, from the diabetes organizations around the world, from collaborators in diabetes health and of course from Google. I hope that I’ve helped you in some way to speak up.
One of the tools we use to help us manage our type 1 diabetes a little better is carb counting or carbohydrate counting. And it’s incredibly useful regardless of what diet/meal plan you have chosen: Keto, low carb, high carb, no carb, Atkins or Bernstein. It’s still good to know how to carb count and all that comes with it.
To me, this makes perfect sense: after all, if the carbs that we eat are what has the biggest impact on our glucose levels then measuring them and matching them to an insulin dose seems like a good way to reduce the variability of this.
If you’re someone who hasn’t been introduced to carb counting yet I’ve included a few useful resources at the end,of this post. And If you’re not sure what the carb connection is with diabetes have a read of Section 5 of the Australian “Starter Kit for Newly Diagnosed Type 1 Diabetes” Page 41.
For the first ten years of my life with type 1 diabetes, I hadn’t a notion about what I was doing or why. I took insulin as directed, checked blood glucose as directed and I had an exchange list of foods I never ate.
Then, I moved to America where I met a diabetes educator who taught me about measuring carbs and adjusting my doses of insulin to match the food I was going to eat but also how to adjust for glucose levels that were too high or too low. Before this point it NEV-ER occurred to me that there may be a way to do this!!! (This was 2003 and social media wasn’t even a twinkle in Mark Zuckerberg's eye!)
Also, because this was 2003, I used a sliding scale (AKA absolute and complete guesswork) for correcting high and low glucose levels which I adjusted myself and then once I began using an insulin pump I graduated onto an insulin sensitivity/correction factor.
Fine tuning one of the biggest variables of living with type 1 diabetes made a huge difference in my diabetes management. And the most empowering one! I was doing it by myself, and not waiting on a six month appointment where I was told how much to increase/decrease my insulin doses. My appointments were a bit smoother too as I took more of the control.
It might surprise people to know that carb counting in some form has been around for a number of decades, in some form: remember the exchange list. I’ve read accounts from the longest living people with diabetes where people had figure out a connection and weighed food
It was also one of the diet strategies recommended by the DCCT, (the Diabetes Control and Complications Trial DCCT was a 10 year trial which determined that complications of type 1 diabetes could be prevented or delayed and was published in 1993). Yeah, I know, I only came across carb counting it in 2003!!!
I truly believe that carb counting is one of the most important skills we should have to help us live well with diabetes. Others seem to agree, Diabetes Daily published an article in 2016 including carb counting as one of the 7 Habits of People with HbA1Cs Under 53 mmols ( 7%).
In Ireland, at the moment, there are two types of structured diabetes education courses that cover carb counting for adults and one for parents/children.
For Adults:
DAFNE (Dose Adjustment For Normal Eating).
There are seven diabetes clinics who provide DAFNE. Find the list here.
BERGER
there are twelve diabetes clinics who provide BERGER.
For children, teens and parents:
CHOICE (carbohydrate and insulin collaborative education) PROGRAMME
The list of those centers can be found here.
This is a very real possibility for people with type 1 diabetes in Ireland 2018. Most, if not all, our diabetes clinics are hugely understaffed and so the waiting lists for courses can be extremely long.
And sometimes your clinic just doesn’t have the specialist staff at all to provide structured education. But all is not lost, you do have some choices.
Here are some more links where you find out more about learning to carb count:
***** NOTE If you use a US based website for carb counting information be aware that you don’t have to subtract the fiber grams here in Ireland and UK like you would have to in the US.
Your clinic may not run group courses but they may have a dietitian who will work with you one to one during your appointments.
Some private diabetes clinics provide a one day intensive course that you can pay to attend.
Regardless of where you learn to carb count a good place to start is to identify, weigh and collect the nutritional label information your carbs into a notebook or electronic notes for at least two weeks. This is usually what your first session with a healthcare professional will start with and at least you will be that one step ahead.
The National Clinical Guidelines for Adults with Type 1 diabetes were launched in June 2018 and focus hugely on providing structured diabetes education to all adults within six months of diagnosis and to all young adults transitioning from the children’s service to the adult one.
Diabetes Ireland are campaigning that the funding for the extra staff to provide this education will be included in the HSEs budget for 2019. If approved we should see staff training begin towards the end of that year and this recommendation begin rolling out in 2020.
https://health.gov.ie/wp-content/uploads/2018/06/NCG-No-17-Adult-T1-DM_-Web-ready-copy.pdf
I will be 100% behind this Diabetes Ireland campaign in 2019. It’s time for the HSE to get serious about diabetes management.
I'M A FREE CARBER!
The debate between Low/No carb versus the High Carb advocates will probably continue forever and tends to get quite negative.
I have chosen my path is mine and it’s working really well for me, my family and my diabetes. However, I really haven’t declared what that path is in this post so please don’t make assumptions. I will not encourage anyone else to take the path that I have chosen because I believe they have to find the one that works for them, their families and their diabetes.
